It’s been entirely too long since I last posted. There are many reasons for that – not the least of which is my general state of fatigue and burn out on posting about cancer and the roller coaster we ride all the time. I have felt the need to keep you up to date on what’s been going on but haven’t had the time, energy or usual calling to sit down and put it into words. Until now, that is.
A few days ago I had prepared a beautiful post about bone marrow transplant (BMT) and was very close to publishing it. It was full of details about what we’ve been doing over the last month and what our journey ahead looked like as we anticipated finding a donor etc. Thankfully I didn’t post it and don’t have to back track. Everything has changed for us so now I’ll recap and bring you up to date on where we find ourselves and what’s going on with Phil.
A little over a week ago Phil and I met with young Dr. Kossman and Phil won approval to fly to Atlanta to see his friends for a long weekend. At that visit he told the doctor that he found some new lymph nodes above his left clavicle. At the time they were like small peas in size and none of us were certain of their significance – they could have been reactive to the pleural effusion he just had or to the mild infection he’d been treated for. Of course, they could mean recurrence of the lymphoma but they were small and we all hoped that wasn’t the reason. The doctor told him to go to Atlanta, have a great time, don’t mess with the lymph nodes and he'd see how they looked when he got home.
Phil did have a great time and returned home thankful to have seen his lifelong friends. But he returned home tired with a sore chest and difficulty sleeping at night from pain. The day after he came home he had another thorocentesis (#4) and almost 2 liters were removed from around his left lung. He immediately became nauseated, had severe pain and was dizzy and lightheaded. We spent the day in the radiology department where he received I.V. fluids, morphine and anti-emetics. A rough, tough, homecoming.
The next day when he followed up with our Dr. Kossman he looked like crap and felt even worse. The Percocet he took for pain at home was not holding him through the night and he was exhausted. Dr. Kossman measured the lymph nodes in his neck and they were now 1.8 and 2 cm respectively and he had developed another one down below his clavicle measuring 2 cm as well. There was also a new one in his axilla (underarm). With these new nodes, the nodes we knew of on his last scan and another malignant effusion, Phil was clearly in relapse. As Dr. Kossman said, “your disease is coming back forcefully and in a lot of places at once.”
So. No bone marrow transplant. They are not done on patients who are not in remission. On that note, neither brother is a match. If Phil achieves remission again he will have what is called a MUD transplant (Matched Unrelated Donor transplant) with a donor from the National Registry. This also means he will stop the nelarabine chemotherapy. It is no longer working. He will move on to the next option called alemtuzumab or Campath-1H. It is a monoclonal antibody which targets CD-52 protein and knocks out T lymphocytes (all of them). Unfortunately, by knocking out all T cells and not just cancerous ones it is very immunosuppressive and will put Phil at risk of opportunistic infections – like Mucor. He will have to resume ambisone, his favorite!
He will be having a CT/Pet scan to check the status and extent of disease again before restarting treatment. That is scheduled for the middle of next week. Until then he will basically be untreated and in an unopposed disease state. That means more suffering and discomfort for him. Our kids clearly know he is ill but we have yet to explain the full extent of what is going on. Once again we call on you to hold us up in your prayers as we negotiate these numbing, stressful and bittersweet times as a family.